SHASHWAT GUPTA RAY
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PANJIM: When Unnati Srivastav was just three months old, her parents received news that would change their family’s life forever. Their infant daughter had thalassemia major — a genetic blood disorder that would mean a lifetime of hospital visits, blood transfusions and battles that most people her age would never have to fight. Today, the young BBA graduate from Rosary College, Navelim, walks into a Mumbai-based MNC office every morning, a testament to what sheer will and family love can achieve.
“It is very difficult to keep myself motivated,” she admits candidly. “I was diagnosed with thalassemia when I was only three months old. Since then I have been getting blood transfusions as there is no cure for this health condition. But I have no other option but to survive. For that, I maintain a positive outlook and motivate myself.”
Thalassemia is a genetic blood disorder that affects the body’s ability to produce haemoglobin — the protein in red blood cells responsible for carrying oxygen — causing anaemia that ranges from mild to life-threatening. Those with thalassemia major require regular blood transfusions throughout their lives, along with iron chelation therapy to prevent dangerous iron build-up in the body. While a bone marrow transplant remains the only known cure, it is neither accessible nor viable for everyone. Yet across Goa, families living with this condition are quietly rewriting what it means to thrive.
Growing up, Unnati watched her friends play outdoor sports and lead carefree lives, something she could only observe from a distance. It could have broken her spirit. Instead, it shaped her resilience — and her parents deserve much of the credit. “My parents always told me that I was a gifted child and there was no need to feel inferior to others,” she says with a quiet confidence. “Today, despite the challenges, I am able to lead an independent life. We can do everything if we remain positive.”
That sense of possibility has taken some thalassemia patients to places few dared to imagine. Pranita Prabhu Chodnekar, a working banker, became the first thalassemia-affected person in her community to get married — and hers was a love marriage, no less.
“Despite knowing my health condition, my husband forged a relationship with me, which culminated in marriage early this year,” she says, her voice carrying both pride and gratitude. “He, along with my parents, has always encouraged me to lead a normal life. We consulted a doctor, who gave us the nod for marriage.”
In a world where chronic illness often narrows one’s horizons, she chose to live expansively, managing her condition with discipline and determination. “I maintain my iron and haemoglobin levels and take the prescribed medicines regularly, which are available for free at Goa Medical College. I do get frustrated at times, but family support helps me remain stress-free and lead a happy personal and professional life.”
The journey, however, does not begin with the patient alone. Parents are often the first to absorb the shock — and their response can shape everything that follows. Mizelta Dias, mother of a toddler recently diagnosed with thalassemia, has learned this firsthand. “The first step toward dealing with this health condition is to accept that it is a life-long situation,” she says. “Only then will you be able to cope with it. There are medical solutions available. Listen to the doctor’s advice and abide by it. Also, proper counselling is very important for parents.”
Her words echo what medical professionals and advocacy groups have long maintained — that the emotional scaffolding around a thalassemia patient matters as much as the medical one.
Anjani Srivastav, president of the Thalassemia Society of Goa and father of Unnati, is careful about the language used to describe the condition. “It is not a disease,” he says firmly. “It is a genetic blood disorder.” The distinction matters to him deeply.
He explains that there are approximately 35 million carriers of thalassemia globally, and in Goa alone, between 100 and 125 children have thalassemia major, requiring lifelong blood transfusions. The challenge, he notes, often begins with unawareness. “Many couples don’t know that they are carriers of thalassemia minor — they remain normal. But when two thalassemia minor persons marry, there is a 25 percent chance in every pregnancy that the child will be thalassemia major.”
Yet he refuses to let statistics define the conversation. “We have to encourage our children that nothing is impossible for them. They may not be able to do things like rigorous physical activity, but there are many other things that they can excel at. This support is a huge morale booster, which can make them do wonders in life.”
The Goa Medical College’s Paediatric Department and Blood Bank have been pillars of support for these families, providing medicines and transfusions, often free of cost. Anjani is grateful — but he and others like him know that medical infrastructure, while essential, is only part of the answer.
The deeper medicine is human – a parent’s reassurance, a partner’s unwavering love, a community’s refusal to give up. In Goa’s thalassemia community, that medicine is being administered daily — and the results are nothing short of remarkable.
